March 2, 2017

My First Thirty Years with HIV




 

In 1987, Algerian-born Frenchman Didier Lestrade witnessed the early days of ACT UP while visiting New York. Two years later, he founded a Parisian counterpart of the AIDS advocacy and protest movement. Over the years to come, he and ACT UP became a pivotal force in improving medical care and reducing infection rates for HIV/AIDS in France.

~French HIV/AIDS activist Didier Lestrade reflects on a lifetime spent fighting the epidemic, in both public and private~

The following essay—a reflection on 30 years spent living with the virus—was published last year on his blog. With the 30th anniversary of ACT UP's American birth next month, it's a moving consideration of the HIV crisis in a personal light that's too often unseen.

A friend recently told me he had become disillusioned and no longer had the righteous indignation with the world that I did, and I thought to myself, secretly, that it had to be because I'm HIV-positive. Last April marked 30 years since the test that thrust me from one reality to another. I was 28, it was at the Centre Fournier, and I'm not going to hash it out again. It was a nonevent. I didn't walk back home crying. I told my first real boyfriend, who went and got tested and learned he was positive as well, I told my brothers quickly enough, and then I became a militant, pure and simple. 

I discovered ACT UP in New York on my first trip to America in 1987. My lover at the time took me to my first meeting, and what I saw was such a revelation that I co-founded the Paris group in June 1989 and stayed involved for the next 15 years.

I wrote about my seropositivity at my tenth anniversary, and my 20th, but my 30th has me torn between disaffection and the astonishing realization that 30 years is an entire life. I became positive before some of my friends were even born. I keep reminding myself that I never thought I'd live for so long. My survival has been uncertain enough that I've never decided whether I should do anything serious with my life. I've had to steel myself against survivor's guilt as everyone else got sick and died while I didn't. Little by little, I stopped caring that everyone else was passing away. I've become the armor I built for myself.

I've seen enough gay guys hit their 30th anniversary that it's not so surprising anymore. A decent number have even been positive for 35 years. We all have the same face. We all know that this epidemiological crisis is the most extraordinary one in modern times; we've seen its effects on science and sexuality. It's not over; those awaiting treatment still outnumber those who have their disease under control. But the victory is still real. We've done something with our lives. Ours and everyone else's.

Now the nurses who drew our blood from the very first day are retiring. We'll follow suit in a few years. We'll get older; we'll keep apace with all those who haven't been positive. We'll hold back from dwelling on what we've lived through. Maybe we won't have completely bored you talking about our condition. We'll have spared you. We won't have told you about the worst of it; most of us will have resorted to adages that are now truisms. The worst of AIDS hasn't been told. The books and films have been too afraid of scaring off our hard-won allies. And there's always that fear something worse will come along, a far more serious illness with less prospect of treatment. Car accidents are far more fatal. Victims of warfare and terrorist attacks and famine make us look fortunate. So we've tried not to annoy you too much, even if some of us cashed in on our masochism.

What gets my blood boiling these days is that I have to take a dozen pills every night. Every single night, every single night, every single night. This repetition since 1991 has driven me crazy on the inside. Over those 25 years, that fury has forced me into every single contortion I could devise. I'm worn out by this compliance, even though I know anger and fatigue are pointless—it's my own prison, one that nobody can ever see or understand. I know it's nothing compared to what diabetics endure, but I could have become an insomniac conniving to take those pills as late as I possibly could each night. I've come so far in my hatred that I take these tablets by myself, as if I were hiding them from my guests, even though they don't care, even though I used to intentionally swallow them in front of everyone, to inure and educate them. But these days, it's as if I want to shield them from this truism I've become.

Being HIV-positive changes you irrevocably, and these pills are the miracle workers that you have to show anybody who might claim it's not that serious to seroconvert in 2016. Three hundred sixty-five days multiplied by 25 years makes 9,125, but that doesn't convey just how exhausting this repetition has become. The worst part is that I'm actually grateful. These pills, even the most toxic ones, have allowed me to live. My faith in medicine has only increased. Those dealing with my health, skin, teeth, sight, heart, bones, guts—I owe them my soundness of mind. But 30 years, I'd never have imagined it. I didn't want to die, but I didn't mean to live so long.

Over these 30 years, we've managed to overpower this illness. But other conflicts have intensified in this time. A virulent virus turns out to have been easier to eradicate than colonialism or imperialism. The environment is going to hell. Wars and attacks flare up everywhere. Famine is now compounded by drought. And all the rich just get greedier. A friend stopped by two days ago and said what I've been thinking recently, that gay people ought to be happy. But we're still a reminder of what has happened, of what we've endured. People abandon us one day or another, with just a text message and no explanation of why they don't want to see us ever again. And we have to keep quiet, we have to not get angry, we have to accept that we scare them since we're positive and, often, they're not.

Younger generations don't want to know anything, and the older ones are ashamed of their past. And the rest of us are dying off, all of us wellsprings of knowledge with thousands of stories to tell but nobody listening. All that's left are these pills that we hide and don't talk about.

And Sidaction, that annual AIDS awareness event, has created an advertising campaign that reduces what we in France call SIDA and you call AIDS to its simplest form: "It's complicated."

Well, yes, we know.

Translated from the original french by Jeffrey Zuckerman

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